News

You have been invited to take part in this survey because you require a biological medication for treatment of a specific medical condition. Your participation will enable better understand of the needs of patients on these types of medications and the issues surrounding changes to medication, involvement in shared decision-making and any educational needs.

The NHS is currently looking to the future to see how it can best deliver services that are safe and of high quality. Any change to services must incorporate new advances in medicine; take account of budgetary restraints whilst still providing services that meet patients’ needs.

Part of this process will be to review costs of treatment and compare with alternatives that may provide the same effect at a lesser cost. However, it is important that any changes to treatment are discussed with patients and the benefits and disadvantages clearly considered.

Medications are one of the areas where changes may be made to provide the same level of treatment but at a reduced cost. For instance when you go to the chemist for over the counter medication you will have a variety of options with a variety of costs for the same treatment. NHS England has outlined some Good Practice Principles to ensure that any changes in patient medication will be communicated and managed correctly.

The Patients Association want reassurance that these good practice guidelines are being adhered to and that patients are well informed. Also, that they are fully involved in shared decision-making about the best treatment for a specific condition. This is essential for all patients affected by the recent NHS England decision to promote biosimilar in place of Biological medicines.

The Patients Association is a national independent health and care charity, listening to patients and speaking up for change. We have a long history of investigating people’s health and care concerns, supporting and advocating for patients and promoting good practice amongst health and care professionals concerns[

Help us improve care

The NHS is trying to find ways to reduce costs but not quality.

Biological medications for conditions such as arthritis, Crohns disease, psoriasis to name a few are one of the areas where savings could be made by switching to a bio-similar drug at a lesser cost. If you are taking these medicines the Patients Association want to hear what you have to say. We’ve launched a survey ‘Medications for Specific Conditions’to find out how you feel – share your views by logging on to our website:www.patients-association.org.uk/have-your-say

You are also invited to attend our focus group to explore the topic and give your views in more detail at the Studio – 7 Cannon Street, Birmingham B2 5EP on 20 September 1:30-4:30pm. Refreshments provided. Contact Teresa.wilson@patients-association.com to register your interest. Places are limited so book early

We recently recorded a new podcast with Dr Andrew Thompson from University of Sheffield on the 15th of May. Andrew is a clinical psychologist from the University of Sheffield. He has recently been involved in developing and testing self-help interventions aimed at reducing distress associated with a variety of conditions that effect appearance. This work has focused on the application of techniques from a variety of models including CBT, Mindfulness, and Compassion Focused Therapy.

Just some of the topics we discussed in this podcast include alopecia, anxiety, social anxiety and cognitive behaviour therapy (CBT). We will update you when the podcast is ready for public listening. In the meantime please listen to our other podcasts: https://www.mindandskin.co.uk/podcasts/

Podcasts 5 & 6

We recently collaborated with Skin Care Cymru and Dr Avad Mughal in recording two new podcasts. In the first podcast Dr Mughal discusses Eczema pathology, manifestation, steroid phobia and impact on daily quality of life. Dr Mughal is a Consultant in Dermatology and Honorary Senior Clinical Lecturer with Swansea University. In the second podcast we sat down with three patients who have experiences of Eczema, Melanoma and Rosacea.

We are aiming to have these released late May. Updates will be available via our website and social media pages.

Thank you to Dr Mughal, Julie Peconi and guest speakers for volunteering their time with us.

Podcasts 2018

Mind and Skin are the only organisation actively stimulating dialogue in psychodermatology through podcasts with clinicians and patients. We want to not just reach a national audience, but an international one too. There is a large range of topics to discuss in the paradigm of psychodermatology and we aim to bring it to you, whether it is at home, on the move or in the workplace.

In 2017 Mind & Skin aimed to release several podcasts, however due to costs of producing these we have struggled to meet our ambition. However Mind and Skin have now reviewed how we will be delivering these podcasts and hope to deliver them within 2018.

We would also like to take this opportunity to thank those who have already participated or are booked in to record a podcast. We appreciate you volunteering your time to support our goal.

If you are a patient, dermatologist, psychologist or nurse and feel you have something important and positive to contribute in a podcast, please contact us here: mindandskincharity@gmail.com

Donate

We rely almost entirely on voluntary donations to fund our work. Your donation will help us raise awareness of the psychological issues that dermatology patients may encounter and provide talking therapies that will help increase self-esteem, reduce stress and improve the physical and psychological aspects of a dermatology patients skin condition.

The most effective way to help us is to donate. This can be done on the links below with BT MyDonate and JustGiving.

Mind over Matter: Ellie & Eczema

Six years ago; if you had asked me what Eczema was I would have told you a mild irritating patch of skin that you can pop cream onto and it will disappear. I’m sure most of the general population think this too.

Why wouldn’t they?

My own perception of eczema changed six weeks after my daughter was born. She was perfectly healthy when she was born, breast fed like a champ and we had no complications. Physically, everything was going along nicely until she hit six weeks old and the red, itchy “monster” started creeping over my daughter’s face until it covered every inch. Here our long, eczema journey began. I’m going to fast-forward now through six years of infections, appointments, broken nights, lotions, potions and hospital stays. Let’s skip past the emotional toils, the blood stained clothing, the medications and the self-doubt.

We were at a stage where my daughter wasn’t able to go to sleep without me physically observing or restraining her to some capacity. The journey to sleep time had turned from a time of day into dread. Sleep time brings the itching to the surface and whilst drifting, her sub conscious self would let go of all of the itching and scratching she had held in through out the day. At this point, she was prescribed a large dose of a sedative antihistamine called Hydroxyzine. Though this medication worked to some extent, it came with morning hangovers, dry mouth and tooth decay. She also was developing a tolerance to it. It was around this stage that I had become involved with various research studies and I found myself becoming engrossed in academic papers about Eczema.

Anything to find a cure, right?

I stumbled across a paper by Dr. Joachim Heinrich which stated that children who have eczema beyond the age of 2 were more likely to be susceptible to mental health problems in the future. I realised there and then, in my quest to ensure my child was physically healthy, I had to ensure she was mentally healthy too.

This is when I introduced mindfulness and meditation to her when she was five years old. I know how much meditation has helped me control my own anxiety and I was confident that providing her with a guided, relaxation/meditation at bed time would provide enough distraction and allow her to fall into a more calmer sleep. I’m pleased to say it has worked, my daughter rather than being heavily medicated in the evening is now (we joke) heavily meditated and it works for us.

What else does mindfulness do for her?

We work on mindful exercises to help reduce anxiety meltdowns, which more often than not would create widespread itching, which would make her bleed. So we distract by getting her to tell us 5 things: 5 things she can see, 4 things she can hear, 3 things she can smell, 2 things she can taste and 1 thing she can touch. This is just a small example of what we do.

A year into this, my daughter still has severe eczema and a few other skin conditions but she is now has the emotional coping skills she needs to manage it. She is thriving emotionally and socially despite her physical symptoms and I’m confident that she is going to carry this forward growing up.

My vision is to deliver sessions to other children with eczema. To invest in the mental health of these children, to boost self-esteem and give them the emotional coping skills they need for this world of ours. It won’t make the itching go away but it will help them along the way to cope with their symptoms as adults.

Acne & I : An anonymous submission

During my teenage years I was hounded by skin problems. From the age of about eleven my face had a cycle of going through bad to very bad acne. At the beginning friends and siblings made fun of me, called me names and said I was unhealthy, but as the years went by everyone my age experienced something like this and had a bit more understanding. I never stopped feeling self- conscious about it though and sometimes I went to extreme lengths to try and get rid of it. My aunt suggests rubbing my face really hard with a sponge, which made me look as if I had scraped my head against the wall. Another friend suggested putting toothpaste on the affected areas, which really dried my skin out and probably, wasn’t the healthiest solution. Eventually I just accepted it as one of those inevitable problems of youth. It made me feel unattractive and disgusting, but I settled into it.

When I was 16 I hit a pretty bad patch of depression. I imagine my skin problem was apart of it, I had this horrible perception of myself that wouldn’t really budge. When my panic attacks began I decided, very quietly, to visit the doctor. It is important to tell a professional, see it like a physical problem. Anyway, I went to the doctor and he instantly saw the link between my skin and emotional problems. He gave me a range of options and methods to treat my acne. He prescribed me some pills that worked very well, I mean they didn’t completely get rid of it, but the cycles changed to good to less good.

My mental health did improve after this, of course my depression didn’t just disappear but I did feel better. These things take time, today, at the age of 25, depression and anxiety attacks still come and go as they do for a lot of people. But by focusing on your breathing, and taking control of your mind, you can observe, apply logic, and accept it as a part of life that will eventually pass. Talking to people also helps, even if you do not have anyone you can really speak to there are plenty of organisations, such as the Samaritans, who will listen to you.

Psychodermatology and Rosacea

Dr Livia Soriano & Dr Anthony Bewley

Rosacea is a common persistent facial skin disease. Signs and symptoms of rosacea include red or pus-filled spots, dilated blood vessels, facial redness which can resemble blushing, and in some cases, it can be disfiguring. It tends to begin between 30 and 60 years of age and persists in later life.

Symptoms can be worsened by regular day-to-day activities such as drinking hot caffeinated drinks, alcohol, eating spicy foods, staying in hot environments and under direct sunshine. Its impact on one’s quality of life results in psychological stress, and over time it impairs an individual’s emotional well-being.

Patients with rosacea have higher rates of depression, anxiety and embarrassment compared with the rest of the population. (1) The presence of depression is often not related to the objective severity of rosacea, rather in individuals who perceive their condition to be severe. (2) Psychological distress is common in patients who are anxious about social consequences of facial redness and blushing, and relates to feelings of stigmatization, reducing self-esteem and self-confidence. (3) (4) Patients affected by rosacea often find that it affects their social activities, work, diet, exercise and even sleep. Symptoms can lead individuals to avoid public contact, cancel social engagements, and resign from work. It is important to recognize the impact of rosacea on one’s emotional well-being and seek help. (5)

Currently, there is no permanent cure for rosacea, but symptoms can be controlled by avoiding triggering factors and by using medication. Treatments are targeted to the different forms of the disease, and often a combination of treatments is recommended. For example, red spots can be treated with anti-inflammatory agents such as ivermectin cream, oral doxycycline or isotretinoin tablets. Dilated blood vessels can be treated with ND:Yag or Pulse Dye Laser, and redness can be controlled with brimonidine gel. Cosmetic camouflage can also be used to conceal redness and irregularities of the skin and has been shown to provide emotional benefit for individuals with skin conditions. (6) (7)

As rosacea often affects a person’s emotional health, an assessment of an individual’s psychological well-being and appropriate treatment is also recommended. Psychological treatments are tailored to a patient’s individual needs, which include oral medications and talking therapies such as cognitive behavioural therapy, which is helpful for managing social anxiety in patients with a fear of blushing (4).

A psychodermatology clinic enables access to both skin and psychological expertise and treatments. Management of patients in this clinic is recommended for patients with skin conditions with mental illness, from both patient and cost perspective. (8) Where a patient suffers from depression or anxiety associated with rosacea, referral to a psychodermatology clinic is recommended.

The SKINS project: young people’s experiences of acne, eczema, psoriasis and alopecia

By Abi McNiven

Researchers at University of Oxford, in partnership with the DIPEx charity, have been running a project on young people’s experiences of skin conditions (acne, eczema, psoriasis, alopecia). The study involved interviewing 97 young people aged between 13-24 years about their experiences of having a dermatological condition to produce new resources on Healthtalk.org. Researcher, Dr Abi McNiven, writes here about the study and the online resources now available.

I joined the Health Experiences Research Group (HERG) at the University of Oxford in late 2014 and began working on an ambitious new project about young people’s experiences of four common skin conditions: acne, eczema, psoriasis and alopecia. Having personal experience of both acne and eczema, the psychosocial impact of skin conditions is a topic I felt strongly about when I arrived to the research. This commitment to highlighting the impact that skin conditions can have only grew stronger and stronger as I heard the stories of 97 young people in the UK who volunteered to take part in the project.

Some readers will not be surprised to hear that many of the people we interviewed had experienced difficulties because of their skin conditions. Sometimes the distress was due to the condition itself causing them pain and discomfort (itchiness, soreness, throbbing or stinging, flaky skin, loose hair) or because the treatments had unpleasant aspects to them (sticky and smelly topical creams, stinging the skin, painful procedures, medicine side-effects). Often, though, the thing that hurt the young people most about their skin/hair condition was the way it made them feel about themselves and the way others might think about or behave towards them. As Harry, a participant who was interviewed about having alopecia since the age of 14, explained:

“It’s a journey. I don’t think any one [person’s experience] is the same. […] There’s ups and downs. And I felt like at first it was down when I was first losing my hair before I shaved it. It was just down, down, down. There was no up-side to that whatsoever. After I shaved my head I’d say it made me feel better, a bit better, and then I lost my eyebrows and it was down again. And I just think the emotional bit is the fact that you’re out of control and the fact that you can’t do [anything about] it. I think that’s the hardest thing.”

The emotional impact of having a skin condition could ripple across all aspects of a young person’s life. In particular, adolescence and young adulthood is often seen as a time when lots of changes and new experiences are happening – for example, changing schools, starting college or university, getting a job, moving out, having relationships, building friendships, socialising and hobbies. When Abbie was interviewed about having acne since age 13, she talked about the relationship between stress in her wider life and acne symptoms and treatments affecting one another:

“It used to stress me out a lot, like all the exams like plus me having acne as well and I was doing all the treatments and things. And it was quite a build-up of things [which] kind of made [it] worse. And especially when I went on the Accutane [isotretinoin tablets], cos then I got the side-effects. And obviously Sixth Form, cos I started A-levels. So it was all a big like change. And that was all quite stressful as well. So I think the acne didn’t help with that either.”

The multiple layers of young people’s lives can mean that the practical and emotional energy involved in a skin condition can have a huge impact on young people’s sense of identity. Tania, a participant who has had eczema since she was 4 years old, found that make-up irritated her eczema but that being unable to wear it was difficult when she was younger:

“I just wanted to do what everyone else was doing cos I was that age when everyone wore the same clothes, awful clothes, and everyone was like trying make-up for the first time and everyone was kissing boys for the first time. And I just wanted to be doing all of that. And because I couldn’t do the make-up thing, then I felt like I’ve been robbed of everything. I felt like all of that was because of the lack of make-up and therefore the double lack of confidence, it all kind of started to knock onto all the other stuff.”

The project was unusually large for a qualitative study: conducting the interviews, analysing the data and writing website content illustrated with hundreds of clips from the interviews was quite a task. Thanks to the generosity of the participants in sharing their experiences, four in-depth resources for Healthtalk.org have been created and evaluated before being officially launched at an event in Oxford on the 3rd April 2017. These four resources combine both factual medical information and a range of personal experiences for the benefit of other young people affected by skin/hair conditions, their families and friends, and, importantly for improving medical and social care, health professionals seeking more insight into what it’s like for the young people they see with these conditions. This latter aspect was a key point made by Louis who had a post-viral episode of psoriasis lasting two months when he was 18 years old:

“It’s a strange experience to just walk in [to a GP’s or dermatologist’s] and just sort of be this rash. So I think for anyone who’s coming into contact with someone who’s got a skin condition, whether they’re a GP or whether they’re a friend, whether they’re a stranger – try to think that this person isn’t just a rash or a boil or a whatever. They are a person who happens to have this quite inconvenient problem with their skin. And they’d much rather you treated them as the person they are than just a skin condition.”

The website sections are resources offering information about the conditions and what it’s like for young people, taking into account the wider context of their lives (e.g. their social lives, friendships, relationships, hobbies, school/university and work). We hope that the websites will be a source of support for young people affected in finding out about the experiences of others. The resources can also help medical professionals more fully understand the specific information and support needs of young patients with skin/hair conditions, to further medical teaching and training.

By Dr Abi McNiven

All the clips featured in this post, and many more, can be found on the Healthtalk.org websites:

This article summarises independent research funded by the National Institute for Health Research (NIHR) under Grant Reference Number PB-PG-0213-30006. The views expressed are those of the authors, and not necessarily those of the NHS, the NIHR or the Department of Health.

When we genuinely love and accept self

By Ogo Maduwesi

A few months ago, I got a call from a man whose wife is living with Vitiligo and we met in their city in two days. They met me that evening in the hotel lobby and whilst I talked with her husband, she sat there staring at me, the husband assured me that he is neither disturbed nor worried about her vitiligo, but would want to know if there are helpful treatments and some self-help guides. I found him a very positive man, I was really impressed with his positivity and approach to all (yes a very positive one in the society I live), I commended him on that, but he wouldn’t accept he is that positive. This is one trait I found out about people who are genuine and real, they have a great attitude and are really quite humble.

Suddenly she called my attention to her spots and patches with the wife speaking for the first time. The spots and patches were not on the exposed areas of her body but she was going to show them to me there in the lobby. I had to smartly stop her. I noticed the husband was surprised at the wife being so open and free with me but did not say a anything. They took their leave at about the same time, as I walked them to the door; she leaned on me and asked:

“How do you do it? How can you talk boldly and confidently? Is there something I need to do to be able to stand like you?”. She continued, “I am so happy meeting you, knowing that there is someone I can talk to that understands exactly what I am going through,“It’s been hard for me, really hard that I find it difficult taking off my clothes before or around him, I feel so unhappy and ugly”.

All I could do at the point was to extend my hands for a hug and then I said to her, you are so lucky, you have a very supportive and appreciative husband who seems to accept and love you as you are. Then she whispered, how am I sure? What if he is just acting? Sadly, he heard it and that broke the husband’s heart, he asked, “How possible?”. He was trying to control his tears as his voice had already been shaky. This is the part I always wish it doesn’t get to when counselling or discussing with married couples.

This brings me to my topic “When we genuinely love and accept self”. The expression above is one I have heard from different couples, more from women. What makes people feel that way? I mean, doubting their loved ones even when they show all love and affection?

Here is what I think and believe having been working in this area for years, until we accept and love ourselves, we will continue to feel insecure and socially excluded. Now I know very well that this is not an easy path yet it is the only path to win the situation. For as long we continue to doubt and question compliments and good endeavors, we will never accept nor believe in us because we can only give what we have. We often times look at others and conclude that their life is perfect and we desire it, yet every human I know is struggling with something directly or indirectly. The beauty queens, the movie stars and celebrities are all inclusive.

The happiness, self-peace, love and acceptance we seek, all begins with us. Truly, when we genuinely love and accept self we worry or bother less about what the next person thinks. Self-acceptance brings happier life, true freedom, the freedom to live above societal expectations, demands and pressures.

I personally think it’s the best gift anyone and any person can give self. When you have accepted you, you become a more confident person, you become more appreciative, you become healthier, you heal, you look younger. Then what any other thinks about your appearance becomes the least of your worries. After all, we all have our individual styles, perceptions, imperfections and flaws. That the society feels that a particular hairstyle is the best of the moment doesn’t make it the best, please go with your own style, go with what works for you and that which makes you happy and comfortable. Armed with self-love and self-acceptance, walking your style will be effortless and when you do, you exhume self-confidence, amazing self-esteem and you conquer social exclusion, no person can possibly exclude you socially when you love and accept yourself.

Then, I saw this quote a few days after the encounter with my friend “Self lovehas often been seen as a moral flaw, akin to vanity and selfishness” – B. Kirkpatrick ed., Roget’s Thesaurus (1998) p. 592 and p. 639